The fibro symptom that scares me most

If you suffer from chronic pain, you’re used to suffering from a myriad of symptoms. One day to the next, you experience something different to the day before and you adapt and respond as necessary.

Pain doesn’t scare me, fatigue doesn’t scare me. Numbness, heart palpitations, migraines and nausea don’t scare me. But one thing does. One fibromyalgia symptom makes me so uncomfortable and nervous that I feel scared and a little sad about my health. Even though I know that fibromyalgia isn’t a degenerative condition, there’s one thing that feels like it’s deteriorating. My driving.

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I’ve been a driver since the age of 17. I always wanted to drive; as a kid I had a toy steering wheel which could be stuck to any wall or door in the house, I played bus driver all day long, and I remember sitting on my parents lap and holding the wheel as the car crawled down the driveway to a stop. When I turned 17 I got driving lessons for my birthday, and as soon as I passed my test I bought a car for £100 from one of my teachers at school. It was a heap of junk but I didn’t care. It was mine.

I’m now 32 and I just don’t understand people who can’t drive. I don’t care how good your public transport network is, why would you not want to drive?! I love the flexibility, the freedom, the options. I love nothing more than driving; it’s never a chore, it’s always a joy.

Last year my love of driving disappeared. It was becoming more and more painful and I eventually admitted defeated and accepted that after ten years of driving a manual, I could no longer cope with changing gear. My pain was too bad and I spent too many days unable to control my car. I gave in and bought an automatic, expecting to hate it, but it absolutely changed my life. I rediscovered my love of being in the car, and I went back to driving at any chance I got.

Then, last year, I was busy at work and doing a lot of driving. It was starting to take its toll and I had a series of scary moments where I fell asleep at the wheel; twice on the motorway and once on a country road. All three experiences scared me and after a while, I realised I could no longer commit to a three hour car journey. It happened a couple more times before I eventually accepted that an hour is my limit – any more and I just can’t be sure I’ll stay awake.

Recently I’ve been pretty proud of myself. Once a little girl racer I have slowed down my driving, I’ve stopped driving long-distance and I only ever drive automatics. I like to think I’ve worked with my illness, rather than against it.

But last week, I was driving at night and I felt a new level of fear. It was dark and raining and for third time in a month-or-so, I couldn’t focus on the lights around me. I wasn’t sure what I was looking at, and I swerved as I thought a car was coming in to the side of me at high speed. It turned out to be nothing more than a reflection but for a moment my heart stopped.

Image via liofirm

I thought nothing more of it until it happened a couple more times; once after a long, hard day and once in extreme rain and bad weather. I justified the confusion as exactly that – bad weather and fatigue, but deep down I feel like something just doesn’t feel right.

I wrote this article a few years agowhich looked at whether or not fibromyalgia is a progressive, degenerative condition like Multiple Sclerosis. Science says it’s not, but sometimes it feels like things are getting worse. It feels like some of the symptoms are less manageable than they were, and that can be difficult to cope with.

Given the choice I’ll always choose to drive instead of drink. I’ll always volunteer to be the driver on group holidays, and I love driving in challenging conditions. The majority of the time things are absolutely fine and I’m still as confident as I always was, but I know I need to keep an eye on it. I need to be confident that it hasn’t got any worse.

I like to think I can cope with most things but of all the things that fibromyalgia can throw at me, I’m just hoping it doesn’t take away my independence.

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29 comments on “The fibro symptom that scares me most”

I, too, experience problems while driving….mostly increased pain, inattention, and the fear that I can no longer track everything that’s going on around me. I do ok while driving on country roads in low-population assured but I no longer drive in cities. I fear that I may cause an accident. I don’t know if it’s the fibro that’s affecting my brain or if it’s side effects from the medications that I take. Either way, it makes me sad, frustrated and guilty because I now rely upon my mother to drive me most places. She’s a saint. God bless her. =) I’m sorry that you’re having problems. Hopefully you’ll be able to hang onto your independence and love of the open road. =)

How interesting… I’m much better in the busy cities than the dark countryside, I thought it was cos I find it easier to focus on something! Sorry you’re having problems too, thank goodness for your mama!

I agree, driving has always been a great love of mine. I learned on a manual and haven’t driven one in years but the thrill is still there for me.

I have always loved road trips but now with fibro/chronic fatigue/sleep apnea, I also worry about falling asleep at the wheel. If someone is with me, I am just fine but if alone, I can get extremely sleepy within less than a mile at unexpected times. Caffeine or meds help but …!

My fibro began over the first few years after a major bout of stage 4 cancer, chemo and radiation treatment nearly 30 years ago. It was the first of three types of cancer that I have had and I consider myself extremely lucky to be here! My energy isn’t consistent but I push when I can so that I can accomplish ‘almost’ everything I need to do.

My friends are my family. I am an independent widow of 3 yrs. now and in good shape for 71 years, probably from walking a large dog everyday and doing my own yard work with the help of a garden lady/yard woman each week.

I drink one or two caffeine drinks daily and have a prescription for Nuvigil which is not supposed to be addictive but I take it only when I have to drive any distance alone. I am leery of any dependency. (Independent=stubborn!)

I am lucky also in that my eyesight is good, has even improved the last few years but I worry that the fibro fatigue will get worse with age.

Have any of you had any experience with Provigil or Nuvigil which was supposedly developed for people like us? Provigil raised my blood pressure which is normally low or normal, but it spiked when trying it, especially in the summer heat which goes on forever here in Texas, so now Nuvigil is prescribed.

I think chronic fatigue and fibromyalgia are a lot more prevalent than a lot of people believe, including some of those in the medical profession who get tunnel vision when out of their element.
Disbelief is insulting & unprofessional. Ignorance can be cured.
Who on earth would WANT this lifetime battle to be normal again?!? It is not a choice.
We KNOW what normal felt like and want it again. I face aging now along with this but will not go down easily.
Many thanks for this blog~
Barb the NightOwl in Texas

I am hoping to find out that it/Nuvigil is not addictive but it is so expensive (approx. $700. U.S. per mo)that I don’t want to start something and not be able to take it daily as two doctors are encouraging me to do. Taking it every so often is great for the day that I take it but the next day without it, I am a wet noodle, limp rag, flat-out exhausted!

The doctors say that additional fatigue indicates how much I really need to be taking it. What!??! I would love to have the additional energy/well-being and accomplishments but not at that price if it is going to make me dependent on it.

Anyone know anything about this? Barb

On Feb 15, 2017 12:49 AM, “A LIFE LESS PHYSICAL” wrote:

> A Life Less Physical commented: “Agh Barbara I haven’t! Well reminded, > will do so today. ” >

I have issues with driving, too, especially with staying awake and seeing at night. I did not correlate it with my chronic pain, though. This post made me realize that I may need to discuss this issue with my doctor at my next visit. Being 28, it is terrifying that I could lose my independence so early, but with an upcoming surgery I am hopeful that I will soon find some relief from some of my symptoms.

Well, it is not just Fibro, I have ME/CFS/CFIDS (whatever you want to call it is fine by me as long as you accept that it really is). It has been accepted by some people that it too can have a downturn pathway. Yes, as one grows in experience, the symptoms become more managed so that (well for me) I stop complaining about them so much – I don’t like being identified as “John with the headache” – even if those who know me just call me a headache!

Back to driving: Sarah you have experienced my recent downturn in driving ability – and it has been confirmed a couple more times since. At night, particularly if it is wet with reflections on the road surface, then my “change-of-focus times” have really got seriously long. What you saw in me was a very delayed ability to adapt to see in the dark after being in a lightened room. I accepted then that that might have been the problem but I now wonder. It is taking real time to get over the lights of an oncoming car – real time may be only 1 to 1.5 seconds but an awful lot can happen in that time even driving slowly on a slow country road.

I too love driving and have always enjoyed it but now the decision has to be made. No driving at night if it is also wet.

Hi John. My name is Laurie and I’ve had Fibromyalgia for at least 20 years. I have had night driving issues for I’m guessing 30 years. I gave it up long ago. It scared me to death. I always had to rely on my husband to drive if it was dark out.
I opened a home based business so I could still work and bring in a good income.
It use to be said that fibromyalgia wasn’t hereditary. I know for sure that it is. I and two of my sisters have it. As far as it being degenerative I would have to say it most definitely is. I have gone form working 14 hours a day to being disabled and needing help for almost everything. I have no life. I keep thinking tomorrow will be better but it never is.
I also believe that MS and Fibromyalgia are related. MS also runs in our family with 3 family members that have had it.
What are your thought?

My problem is ME (diagnosed as such 1985) when very little was known about it – or come to that matter about a whole slew of related illnesses, CFS, Fibro, etc. it was pretty bad news with permanent headaches and basically 6 moths in bed and off work for more that a year. The permanent headaches remained as my side-helping on top of the specific muscular fatigue, general fatigue and thought confusion. Over the next ten years I managed the situation with some success through a couple of flares each of which upped the stakes until a severe flare in 1996 which changed the nature of the headaches so that I could no longer think coherently for long enough to do my job (I was a successful software support analyst) so I have not worked since then. While I am sure that my more recent problems have been made worse by the ME they are other problems of aging; diabetes, lymphoma and arthritis. I am managing them fairly well but I surely do miss the gardening and the walking.
I am not sure about a genetic component in ME. To me the far stronger component is geographic (it seems to occur in clusters) – which implies that it might be contagious.

My happiest (and scariest) moment over the years was when a very senior medic started an interview with me saying that he didn’t believe in ME. My heart sank – is this another useless specialist? – but he went on to say that ME was a disease or collection of illnesses with multiple and mostly unknown etiologies and multiple inconsistent-between-people symptoms. He went on, “I do not want to treat labels, I want to treat people. What is wrong with you?”

I can feel everyone’s pain because I have the same issues, I have even had times when driving I would have to pull off the road and sit for a few minutes because I didn’t know where I was, what town I was in and nothing was familiar. Luckily it has only happened a few times, driving makes me very anxious , I have days when I know I can’t drive

Hi again!
John, what is ME? Maybe we need a glossary of terms at the end of each blog so that we/new people will understand the language.

Or maybe I need to invent an all-encompassing term so that I don’t have to stagger through saying chronic fatigue, sleep apnea, fibromyalgia, etc. etc. They all do seem to be related.

My sudden sleepiness when driving (or not) sure feels like narcolepsy reads but the brainwaves don’t test out the same at the sleep lab.
And why does it only happen to me when alone? Open windows/radio do not help at all, another person does.

In addition, the med now prescribed by doctors for all this (Nuvigil), is strongly described by these doctors as “not habit-forming or non-addictive” yet when I read the comments online of those who struggle to quit taking it after weeks, months or years of daily use, it makes me really nervous. The side-effects sure sound like what I’ve read about withdrawal.
What is truth?

It’s supposed to be a godsend for shift workers or night owls like me but at what price?

I had never heard of any of this occurring in clusters so I’m now wondering if it has something to do with a pollution level of some sort… Perhaps ‘Something’ In the Water? Air? Soil? Pesticides/Herbicides used on our food crops?
A virus?
I have blamed mine on chemotherapy in ’88 for many years but I can assure you by now that it is either Progressive or I have accumulated two or three other syndromes on top of the first.

Not everyone understands so it is really nice to hear from all of you on this blog. I would love to find a group in real life but maybe we can share thoughts and tips on here that will help each of us. Personally, a dog walk helps my body and my mood.
Kinda cheers up the dog, too.
😉
Just knowing that we are not alone and actually having contact with others really feels good.

Happy Holidays to all~ (whatever you honor or enjoy. Solstice means our days will lengthen here, dark-thirty will be later again!)

This one also had a great joy and love for driving, was also horse trainer and wrangler, sadly and painfully all have been taken from her, have ALWAYS been an extremely physical person…love to run, swim, garden, build, climb, hike, you name it..also loved to sculpt paint, list goes on…now a big challenge is to take a shower an fix a good meal on the same day…she understands your fear..be safe an blessed yatahii.

Dian, is “this one” and “she” referring to you or to someone else? I’m confused.

I, too, have always been very active, sawing tree limbs, building things, repairing items, yardwork, making gifts, baking 36 loaves of sourdough bread, gardening, etc. and the lack of energy drives me nuts. Just this list is tiring!

I can never plan on enough energy to ‘be there for me’ so I often have to stop before I am finished with what I was trying to do. I always feel as if I am weeks or months behind on everything… because I am.
Barb.

Hi
My job is driving. I work as a nurse in a night team. Jus got home and trying to rewind I found this artikel.
This night I drove 195km inkluding to and from work. in storm and rain in the country side of sweden meaning pitch black. Work betwen 21.30 and 07.30.

I have had FM and some other diagnoses since the late 80’s but i go a real dianose this year…Its been ups and downs over the years but now I ve been stuck in a flare for 2 years. Got on sick leve for 1.5 year after an accident (not car related) all my diagnoses flared at once. and in mars 2016 I got cut of from ….. don’t know what you call it.
Not disability but a sort of social security you get when you are unable to work.

Had to go back to work and I was realy scared. One thing that saved me was my glases. My husband discoverd that I almost drove in the oposit lane and long story short. My vision had gone from 1.0 left eye and 0.9 on the right ,almost perfekt to 0.6 and 0.3 in just a few month. I did not notice it. That was scary. I also have aura migreens ..was not able to see at all for 4 days after the accident.

Now god willing ang pants holding Ican work but thats all. Cant do mutch when I’m home.
I realy do think that FM is degenerative.

Hi, everyone~
I have chosen to drive at night for most of my life since I am such a night owl but so far have not had problems with that. After reading these responses from people much younger than I am, I am almost afraid to look forward to the future! We all have such variable symptoms, it is really weird. No wonder it is difficult to diagnose, let alone treat!

One of the major problems that I can see with these responses is that many of these things will happen with age and it is hard to tell someone that they are having problems driving. They don’t believe you and it makes them angry and you can lose a friend.

I have one friend who jumped the curb in a restaurant drive and hit a huge landscaping rock that did a lot of damage to her car and yet she still drives.

Another friend went down a high-speed road the wrong way and made three lanes of traffic stop to see what in the hell she was going to do next. We were lucky to not be killed. She has very slow reflexes and took forever to back up into the side road where she had started. I remained calm and kept telling her to put it in reverse and step on the gas so we would quickly go right back where we started but no, she could not do that without coming to a dead stop and thinking about it for a while. Scared me to death!
Yet she now gets angry if I say anything like “be careful.”

It would be nice if someone would come up with some definitive testing so we would know exactly what is happening and not scramble it with aging. There is a lot more going on than that.
Happy holidays Sarah & everyone! So happy to have found this group.
Barb

I think it is a sign of good judgment on my part that I will not ride with friend number 2 and only ride with friend number one in broad daylight. I am the night driver for all of us. So far.

I have white hair and wear it exactly like you wear yours so I guess I am your ancient twin. Thank you so much for putting this together, I think it will help a lot of people who think they have lost their minds because they are dealing with such difficult issues.
Yes, I hope the New Year brings some solutions for us!
Barb

I used to drive OTR and would drive 10 hours straight, no stopping. After having fibro for 15 years now, it’s getting VERY difficult to manage the 3 hr 45 min. drive to visit my mom several times a year. I used to love driving, I would drive the wheels off of anything, and would go for a drive and end up visiting a relative in a completely different part of the state (I live in Wisconsin). Now, every time I get behind the wheel, I have my trips planned, mostly just errands around my town. I miss the freedom, but I’m hanging on, you hang on too!

Hi Don,
Thanks for sharing. It helps to hear other stories, don’t feel so alone.

10 hours was the trip to my mom’s also and it is not much fun these days to deal with her place. I mostly drove it at night, last time was over a year ago but the thought of that now is sobering. As far as I know I am okay except for fatigue but things do change.
Good luck to you on the road. Hope we can build a group here.

Hi Don,
Planing is important. I know for example where every toilet in a 300 km radies (?) are. IBS is a bitch…But I do fere my bike riding days are over…sad…that is freedom on an other level..
Have a great day/ Liselotte

I see that others have mentioned Provigil & Nuvigil. Perhaps you could ask for samples from your dr. Or, contact the manufacturer to see if they offer discounts. With Nuvigle I drove a 3 hour trip, in what seemed like 20 minutes. I do not take it daily and when I do, I must take it very early in the day so I can still sleep at night. Also, it causes me to talk nonstop and friends aren’t very fond of that.
I save up errands and try to do a lot on the days I take it. Best wishes to you.

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Welcome! I’m Sarah, a chronic pain blogger sharing my tips and tricks for living a life less physical – but no less fun.

I’ve had migraines and fibromyalgia for the best part of my adult life, and I use my corner of the internet to discuss challenges and coping strategies, with a healthy dose of sarcasm and far too many references to pizza.